Monthly Archives: June 2014

Congratulations to the 5 winners of Ultraviolet Voices – Stories of Women on the Autism Spectrum :

Otterknot

Lana

Nicole G.

Mama4science

Tagaught

I sent off emails to the winners, so be sure to check your inbox and get back to me with your mailing address if your name is on the list above.

Survey!

There was enough interest in doing another round of surveys so let’s go for it. The last time we did surveys, I had a lot fewer readers and we still ended up with 5 weeks worth of survey questions so I have no idea how manageable this will be, but we’ll give it a try.

The Concept

Do you have a question you’ve always wanted to ask other autistic people? This is your chance. Some of the questions in the last survey had over a hundred people answer them and often the answers went into a lot of detail. For an idea of questions that were asked and answered last time around, take a look at this post and the posts linked from it.

How it works:

1. Leave a comment on this post with your question(s). You can post more than one question and I’ll try to include everything, but if there are too many questions, I may have to limit the number of questions per person that get used.

2. I’ll collect the questions and organize them by theme.

3. I’ll post the first survey on a Tuesday (tradition!) and then post a new survey once a week until we run out of questions or we get tired of talking about ourselves. 🙂

The giveaway is now closed to new entries – winners will be announced soon!

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It’s time for another giveaway!

The past few weeks have been really hectic, so no new posts this week but I do have some books to giveaway. Late last year, I was invited by Autism West Midlands to contribute to their anthology Ultraviolet Voices – Stories of Women on the Autism Spectrum (more details about the book). It’s a collection of narratives, each 1 chapter in length, most written by women on the spectrum, meant to shed light on the difficulties related to being seen and understood as an autistic girl or woman. There is also artwork, poetry, an interview and some background research. I’m Chapter 2! 🙂

I have 5 copies to giveaway and to keep it simple, I’m going to choose 5 random comments from this post. To enter the giveaway, leave a comment on this post telling me about something that’s making you happy today. That’s it! Everyone is eligible to enter, including international readers. You have until Sunday evening at 5 PM EST. Ready? Go.

Oh! Wait! I have a question for you all and this seems like a great place to ask it – how many of you would be interested in doing another set of make-our-own survey questions to answer? Kmarie wanted me to do a survey about traveling and a while back someone else suggested a survey on another topic. Maybe it’s time to do another survey series?

The problems with person first language have been talked about extensively in the autistic community. Many autistic people have expressed a strong, explicit preference for identity first language. And yet, we’re still treated to comments like this one (paraphrased from a comment on another blog):

I work with children with autism and I always say child with autism because they’re children first and autism doesn’t define them. Also, I say typically developing child instead of normal, because normal has negative connotations. Words are important–they reflect how you think.

My first reaction to reading that type of comment is always, “aren’t the typically developing children also children first?”

Or do we just not need to be reminded that they’re children?

If you don’t use normal because it has negative connotations, does the same logic apply to the use of autistic? Or does autistic exist in some special category of word that’s not bad but also unspeakable?

I fail to see why it’s okay to use the identity first descriptor “typically developing child” but not the identity first “autistic child.” Why do we constantly need to be reminded that the autistic kids are people? Is it so easy to forget? I would hope that no matter what label I use to refer to myself it be would obvious that I’m a person.

Anyone who needs to constantly remind themselves that disabled people are people should probably spend more time examining their own beliefs and less time telling other people how to speak about themselves or their children.

Using person first language to refer to autistic children and identity first language to refer to typically developing children isn’t inclusive. It’s othering and unnecessary.

Person first language arose because disabled people were being referred to by demeaning and pejorative terms that had an identity first construction. In some communities, where a preferred identity first term hasn’t arisen, person first is still the preferred construction.

Autistic people, however, have repeatedly expressed a preference for identity first language. For some reason, nonautistic people who think they know better continue to ignore our (loudly and oft-stated) preference. To those people I say, “If you truly believe we’re people, first or otherwise, then listen to what we’re saying and respect our preference.”

Autistic is not a dirty word. When you act like it is, you aren’t helping autistic people. You’re contributing the very stigma that you pretend to abhor.

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One of my wonderful readers brought this post to the attention of the folks at the Yeah Write Writer’s Challenge it was made an Editor’s Pick. I even got some swag. 🙂

I don’t know how to title this. I don’t know what verb to put in that gaping blank space. I don’t even know if body is the right word.

Maybe brain is more correct, though my brain keeps reassuring me that it knows exactly what it’s doing. It points fingers at my uncooperative mouth and unruly hands, blaming the execution when I’m quite sure something must be going wrong further up the line, in the commands or perhaps the translation from thought to action.

And yet . . .

It’s clearly physical, too. Physiological? I watch my hand go astray as it writes letters that I’ve know how to form–that I’ve been writing without conscious thought–for forty years. Even as my brain is putting on the brakes and mentally shouting at my fingers that an “S” doesn’t look like that, my hand carries merrily on, barely finishing an extra loop or a backward curve before I bite my lip and, with a level of concentration more commonly seen in first graders, trace over the letter until it looks right.

Less obviously physical, but just as confounding, when the word in my head doesn’t match what my fingers type or my mouth blurts out, it feels like an accident of the body. A localized failure to follow orders.

And yet . . .

The brain directs the body, is part of the body. So let’s say body. It’s all a little less scary that way anyhow.

That still leaves the verb. The action. What is this dance that I’m doing with my uncooperative body these days?

All I know for certain is that I need an -ing form, denoting an event in progress.

Taming an Uncooperative Body?

I wish. Taming implies making something easier to control. What’s happening has its own timing and progression. The best I can do is to try to keep up with the changes as they make themselves known, one by one, steadily more strange.

Wiling an Uncooperative Body?

I should know by now the outcome of “just try harder” in these situations, but I still fall for it. Occasionally sheer will works. I’m pretty good at forcing myself through unpleasant tasks when necessary. But with writing? Having a conversation? Mostly I end up cranky, with an achey head and a strong desire for a nap.

Ignoring an Uncooperative Body?

Ignoring worked for a while. When the oddities and slip-ups and errors were an occasional thing, I could pretend they didn’t bother me, that I was being a silly perfectionist. They were annoying, yes, but still easy enough to ignore. We’re past that point now, and have been for a while.

Accommodating an Uncooperative Body?

I tried–and continue to try, though with less enthusiasm–to find accommodations that work. I’ll talk instead of writing, I assured myself. I’ll use text-to-speech to check for errors. I’ll switch to handwriting, slow down my typing, outline, make notes, scaffold, revise as much as it takes. Give up Facebook groups and commenting and reading a zillion blogs and articles, reduce my communication load and stop volunteering for projects. I’ll have silence day and learn sign language and only write on “good” days and settle for a word that’s close enough when I can’t find the one I really want.

Each one worked for a while, until it didn’t anymore. A series of Maginot lines and my brain invaded Belgium every time.

Fighting an Uncooperative Body?

At times, I do, out of stubbornness, a refusal to give in, pride. I’m angry a lot these days. At what, I don’t know. Myself? Why? It makes no sense to be angry at myself for something I’m not purposely doing. Maybe at life, circumstances, the way irony is only truly ironic when it’s happening to someone else.

Maybe I’m more frustrated than angry. Maybe the exact descriptor of the emotion is irrelevant. Instead, if I say that the headbanging urge arises too easily and too often, does that convey what I’m feeling? If you’re autistic, I suspect it does. I guess that’s where the fighting comes in. Because I have to still that urge, patiently walk myself back from it, seek another outlet for that feeling. That takes energy, effort, sometimes just plain blunt force. I’m thankful for a lifetime of practice.

Mourning an Uncooperative Body?

Probably too strong and certainly too final a word, but there’s an intense sadness and feeling of loss that walks beside the anger. My ability to express myself in writing has always been one of the things I thought no one could take away from me. I assumed it was a constant.

My skill with words wasn’t just a strength, it was (is? I don’t know anymore) part of my identity. Writing is an integral part of who I am–one of my oldest and dearest special interests, one of the things that defines me. And I’m sad and scared and angry that it’s possibly dying or, at the very least, deserting me for a while.

Where do you escape to when you’re trying to escape the very thing that has always been your most comforting safe space?

Questioning an Uncooperative Body?

Who is this person I’m becoming? There’s an incongruity that’s developing in the gaps of who I am and who I think I am (was? have been?), between the aspects that continue to be strong and the areas that I’m struggling with in ways I have no contingency plan for.

When I’m not writing or talking or listening, I feel as whole and competent and as much myself as ever. I go out to run in the morning and the ideas flow just as they always have and I think “yes, today is the day.” Then I sit down at the computer, stupidly optimistic, eager to write what’s running around in my head and quickly begin to wonder what kind of tricks my brain is playing on me, what made me believe that today–unlike yesterday or the day before–that today would be the day that I could get from thoughts to words so easily.

Disguising an Uncooperative Body?

Increasingly there is the need to disguise my confusion. How often can I ask The Scientist to repeat himself until his frustration surpasses mine? How often can I reasonably tell him that I need silence because listening to speech, trying to link one sentence to another, holding the fragile tenuous meaning of his words in my head until I can respond requires more effort that I can manage in the moment?

How odd does it look to others when my response to the repetition of a question is “sorry, I didn’t realize that was a question” followed by a request to repeat it one more time? How much easier it is to nod and smile and make affirmative noises and hope I’m getting it right.

Of course, The Scientist is on to me and has started repeating himself when his question is met with confused silence or a tentative guess at an answer.

Living In an Uncooperative Body?

My first instinct was “living with” but there is no “with” here. I can no more live with my body than I can be a person with autism. I am my body, uncooperative or otherwise. Increasingly, I find myself gravitating toward activities that don’t require language. I read less, write less, talk less, watch TV less, run more, walk the dog, workout, listen to music, cook, take long bike rides, swim, play games, tend my container gardens, watch The Scientist fish.

Accepting an Uncooperative Body?

I don’t have much choice on this one. The more frequent and pervasive my language problems become, the more I’m being forced to accept that this is the status quo, at least for now, at least until I know otherwise.

There is also the fact that while I’ve lost a fair amount of my communication ability, I’m still able to communicate many things verbally and in writing. My expressive and receptive language has become literal and concrete and often requires more effort than I’d like, but it’s still functional in ways that matter a lot to me. I should be thankful for that. But the sense of loss is still strong at this point and I’m having trouble getting to a “glass half full” way of looking at things.

*

And so I’ve run out of verbs. I suppose, secretly, I’d hoped that finding the right verb would mean finding a solution, but I can’t write my way to answer on this one.

Not all posts are about answers, though. Some are simply here to say if you found anything in these words that you relate to or you’ve been in this place or you’re in a place like this right now–you’re not alone. And neither am I.

When I posted about my kidney infection saga last summer, a lot of you shared similar stories about difficulties with getting the right treatment for an illness. Often the stories revolved around how hard it is to get proper diagnosis and treatment when your body and brain are atypical in ways that a lot of doctors are not used to seeing. There were a few themes from that post that stayed with me:

We often have atypical symptoms and atypical reactions to medications

We often have difficulty describing our pain, symptoms or illness in a way that doctors understand

Many of us have had bad experiences with the medical system because of communication barriers or the way we experience our bodies

Sensory sensitivities, communication barriers and bad past experiences can cause us to avoid seeking out medical care when we need it

In an ideal world, health care providers would receive training in making care more accessible to autistic adults, and maybe that will be the case in the future. Until then, those of us who feel comfortable doing so have some self-advocacy options:

Ask our health care providers for the accommodations that we need to make care more effective. This is a hard one because there is an inherent power differential in the doctor-patient relationship. Sharing general information articles like today’s AWN post and the information for providers at the AASPIRE website can be a good way to start a conversation.

Share information about doctors who are autistic-patient-friendly. AWN is creating a crowdsourced directory for women’s healthcare providers which is a great way of making information available to a larger number of people. Within the autistic community, there is also the opportunity for informal sharing among people who live in the same city or community.

Take advantage of resources like a personalized AASPIRE report to share our specific needs with doctors we see regularly. The AASPIRE reports are very detailed and probably beyond the scope of a short one-time visit to a new doctor, but they could play an important role in an ongoing doctor-patient relationship.

Enlist allies. Sometimes medical appointments are more successful when we bring along an ally who can act as our cognitive interpreter or support person. This is especially true when an illness is interfering with our communication or decision-making abilities.

What People Are Reading

Yesterday I ventured way way way outside my comfort zone to record an interview on Autism Spectrum Radio. The host, Rob Haupt, asked some great questions and was easy to talk to. You can listen to our conversation here. Rob does a short intro and then the rest of show (about 35 minutes) is our conversation.

My friends Ibby Grace And Amy Sequenzia are editing an anthology titled “Typed Words, Loud Voices”, a collection of works by people who type to talk always or sometimes. They’re looking for essays, poems, stories or whatever form of expression you’d like to share your message in.

As some of you noticed yesterday, I’ve updated the blog theme to add a little color. Maybe down the road I’ll experiment with some of the new features (like this one that allows short “aside” posts). It’ll take some getting used to, I know.

And yes the remodeling is an indication of just how bored I am with all the not writing I’m doing.

Triathlon training is chugging along nicely – 3 weeks to go and I feel great, if a bit worn out. The garden is producing lots of cucumbers and tomatoes, a few eggplants and peppers. And for some reason I’m the only person on earth who can’t grown squash? With the exception of one green squash a couple of weeks ago, all I’m getting are tiny little squash that turn yellow and wither.

Besides a renewed obsession with The Sims, that’s about all that’s new around these parts.